Di Pasquale A., Lisi A., Masellis M.

Azienda di Rilievo Nazionale e di Alta Specializzazione, Ospedale Civico e Benfratelli, G. Di Cristina e M. Ascoli, Palermo, Italy

SUMMARY. Disease and pain propose, at varying levels of intensity, the dualistic alternation between two poles, that of being a body and that of having a body: the experience that one has of oneself oscillates in an equilibrium that continually needs to be re-established. Each of us has a mental image of our body that changes continually and is considerably modified at times of illness. The body has a communicative function and is experienced in its relation to other people, and not as something separate from its surroundings. Since 1993 a programme of psychological support for burn patients and their families has been operative at the Division of Plastic Surgery and Burns Therapy in Palermo, Italy. This programme accompanies patients and their families throughout the entire process of recovery and is intended to contain and prevent burn-related pathological behavioural reactions. In our eight years’ experience we have found that true health comes from an equilibrium between the patients’ physical image of themselves, their mental self-image, and their ability to set up positive reactions. The Division has therefore initiated a plan of care and procedures that considers patients in their mental, physical, and psychological dimension in order to respect and valorize their complexity and their capacity to plan their lives, with a view to an optimal functional return to society. The method used, i.e. that of research and intervention, has made it possible to achieve results that can be considered satisfactory both for the patients and for the hospital structures. With regard to psychological intervention, there are three types: for individuals, families, and groups. The mothers of burned children receive special support, as it is above all the mother who helps a child to adapt first to the hospital structure and subsequently to scar sequelae.

Introduction

A programme of psychological support for burn patients and their families has been operative at the Division of Plastic Surgery and Burns Therapy in Palermo, Italy, since 1993.

The purpose of this programme is to create a network of interventions aimed at patients and the family environment,1 in order to maintain the integrity of the patients’ emotional and affective condition, to mobilize the necessary psychological resources for their care and rehabilitation, and to prevent or at least reduce the possibility of pathological reactions that may generate into conditions of anxiety and depression or post-trauma stress disorders, ultimately leading to drop-out from society, self-diminishment, and loss of self-esteem.

All this clearly affects burn victims’ future quality of life.

In this type of pathology, the involvement on various levels (physical, emotional, cognitive) defines the quality, the limits, and the future trends of therapy.2

The burn is a disease that attacks a person in his or her psychological, physical, and relational integrity, with the result that it is difficult to plan for the future. Burns therefore require an articulated burn “cure” capable of resolving the patient’s overall health needs.3

The burn department psychologist thus takes on a symbolic value, representing for patients a way to start out on the long road through pain, discomfort, and bewilderment that they and their loved ones have to face.4

In our working experience the activity of the psychologist has become a dynamic project whose effectiveness and potential are continuously being put to the test. This has become feasible because thanks to the progress made in research it has been possible to recognize the project’s limits and to exploit its merits, both in theory and in practice.

The model used is that of research and intervention. Applied to a project of psychological support in a hospital department, it has led to satisfactory results and satisfied the hospital facility’s structural functioning demands, with a high level of customer satisfaction.5

Methodology used

The method employed for application of the model of psychological intervention makes use of individual, family, and group interventions; it is diversified according to the different phases and moments of healing, both during hospitalization and after discharge when patients return to their families and their pre-trauma social reality.

During hospitalization, patient support goes through a series of phases, i.e.:

• an initial phase, for welcoming and taking charge of patients in their state of confusion. The psychologist’s physical presence is of great comfort in this phase;
• a second phase, for getting to know patients better, during which the psychologist uses intensive dialogues in order to facilitate their adaptation to the structure and their collaboration in the treatment;
• a third phase, when patients become more aware of their disease, during which the psychologist performs a function of cognitive mediation with regard to their desire for knowledge and information about their condition, the time necessary before final recovery, and the possibility of sequelae. It is the psychologist’s task to establish, in consultation with the patient’s family, to what extent the information given is complete and how gradually it should be provided. In this phase, good team work among the various professional figures working in the department is extremely important from the functional and therapeutic point of view. If patients perceive a relaxed atmosphere of collaboration, this will reflect directly on their state of mind and sense of security and protection. The information given to patients should always be realistic in order not to create false hopes or expectations, which would only obstruct their process of physical and psychological rehabilitation. It is therefore advisable at times to limit information rather than to console patients without good reason;
• in later phases, the psychologist helps patients to perform a cognitive reprocessing of their accident and to re-evaluate it, so that in the end the accident is totally and profoundly worked through. During this phase, pain is an important part of the patients’ experience.

Pain is a psychological experience that invests the individual in his or her physical and mental unity. It accumulates, is memorized, and becomes part of the individual’s deepest psychology.

The dimension of pain depends on both physical and psychological factors. These latter include personality elements, sociocultural and ethnic levels and origins, the patients’ current emotional state, the credibility of their self-evaluation, and their acceptance and respect of their weaknesses.6

During these phases a parallel support programme has to be constructed with patients and their families. This is necessary because mothers, fathers, husbands, wives, and children are all affected, after the accident, by a profound and violent sense of suffering that confuses and bewilders them, with the result that the contact and emotional support they can give to their loved one is inadequate.

The psychologist prepares for the patient’s family a plan of intervention that by means of a series of individual, family, and group dialogues7 enables them to meet other families with similar problems to face. The psychologist thus facilitates patients’ confrontation with their experience and provides them with new methods of coping8 with the hard reality of their post-burn existence.

Model of psychological intervention

Particular attention is given to burns in children and to the direct effect that the mother’s emotional state has on their well-being.9 A child’s working-through process after a burn is affected by the mother’s experience and her own working-through process,10 and it is the mother who has to help the child to accept the accident and its sequelae. It has been shown that a child’s behaviour post-burn is not so much influenced by the actual gravity of the burn as by the stress transmitted by the mother to the child, which may facilitate the creation in the child of patterns of disturbed behaviour. The psychological and emotional damage that may be caused can have effects that will prevent normal relational and social development.11

With this in mind, a long-term research project has been conducted among the mothers of burned children, starting during the first period of hospitalization and continuing for one year. This study has now become a standard plan for action and research and a service for mothers. The research activity has investigated the mother’s experiences and the extent to which this has decisive effects on the child’s psychological well-being and is related to child’s acceptance of the accident. An extensive survey of the literature has shown a lack of studies on the national level, except in Palermo; on the international level, two important centres are active in the field, in England and in the USA.10,12-14

As also reported in the international literature, we found that the mother’s anxiety and depression were at high levels immediately after the accident and during the first phases of hospitalization, after which they gradually reduced, subsequent to the child’s discharge from hospital. This was followed by an increase in anxiety and depression during the second six-month period, when the permanent nature of the burn sequelae began to prove inescapable.

Since September 1993, the support for burn patients has been augmented by a new methodological instrument, the “Meeting Group” (Fig. 1).

This method makes use of the training and experience of the department psychologist and of the willingness of the medical staff to participate in initiatives to welcome and support patients during the process of their physical and psychological rehabilitation. The result is a series of group activities that since the beginning of the initiative has involved young burn victims, both in and out of hospital, in a mutual exchange of experiences and with a commitment of reciprocal solidarity and care. The group is led by the psychologist, flanked by a department physician, who responds to the patient’s need for information, reassurance, and preparation prior to surgical operations.15

The group is the ideal place for information and for the development and modification of relationships, mediating between society and the individual, and vice versa. The group represents a way of thinking, of living, of perceiving interpersonal plurality.16

The group is also where the patient’s physical change is worked through, where psychological blocks can most easily be overcome, and where experiences, fears, and defences can be worked through. It is a laboratory where new and more effective socio-affective skills can be learned.17

We believe that the success of this method, despite all the difficulties that have had to be faced in the course of the years, is due to a good level of intuition based on extensive study of the various aspects of the burn experience.18

A burn threatens, first and foremost, the field of interpersonal relationships, the patients’ self-perception, and their image of themselves. A set of defensive structures is created, which in the absence of effective counter-strategies will gradually restrict the patients’ vital and psychological space and the quality of their family and social relationships. There is also the risk of the development of processes of self-denigration and pathological depression. Young burn victims desperately seek normality, but the external image that they continually find themselves coming up against appears to them to be full of stereotypes and prejudices. Our team’s intervention recognizes this need and seeks to provide a response that is simple and creative.

The weekly activities are interrupted by moments of extended socialization both in and out of hospital. Extended programmes for socialization and contacts with the external social environment are set up, including social, recreational, and therapeutic activities:

• in winter, special parties and meetings are organized on the occasion of important festivities;
• in summer, excursions are made to local tourist resorts of special historic importance or natural beauty that offer bathing and recreational facilities (Figs. 2-7).

These activities have a highly symbolic value and are a winning challenge in the struggle to overcome psychological resistance.

Another highly specialized method, for which our psychologist has received specific training, is what is known as the “psychodrama” technique. This works on burn victims’ more deep-seated resistance and suffering, completing the process of psychological integration.19 This is performed every two weeks, during the winter period, and is reserved for patients who have already completed the course of healing and physical rehabilitation.

As already said, the model of intervention is holistic and unitary in conception, and therefore also involves physicians and nurses. Meetings are organized with the hospital staff in order to discuss individual cases and to compare professional and human experiences, and to review any relational conflicts with patients20 and among the staff. In the last two years special refresher and training courses on interpersonal communication have been held.21

The method used in these courses alternates theory and training in groups,22 with the active involvement of all participants, socialization of personal experiences, and simulation of significant events.23 The object is to create a more favourable relational atmosphere among the staff, to stimulate greater awareness of the patients and their needs, and to prevent the slow-developing phenomenon of burnout.24 The course is in the form of cycles of seminars on specific thematic experiences. The participation of physicians, nurses, and physiotherapists helps to improve interpersonal communication and makes the programme more effective and positive.

All the human resources available are used to realize this programme, and a considerable contribution comes from the ongoing collaboration between trainee psychologists and qualified physicians who continue to work on a voluntary basis after completing the training course.

Considerations

The experience we have gained in these eight years of activity of psychological support to burn patients and their families enables us to express a very positive judgement. The model we have developed has shown itself to be effective as regards the quality of the response to the patients’ requirements of health and psychological well-being.

The methodology used has proved to be appropriate for the patients’ need of support and physical and psychological rehabilitation, especially as regards their return to their social or school world with an optimistic and positive approach.

The persons attending the group meetings learned not to hide themselves away but to become active agents of social promotion in their impact with others. They very often see the sense of embarrassment in other people’s eyes and are the first to start up a dialogue. They learn to give thorough and serene answers, when the questions they are asked are put with respect and affection, but they are also capable of rebuking anyone who addresses them without due respect. The individual, family, and group intervention has the effect of a training course, reinforcing self-esteem, the replanning of the future, and, where necessary, the rediscovery of total emotional equilibrium and the desire to face the world with confidence. The continual learning process helps burn victims to find in the manifest diversity of their scars the richness that comes from a strong and tempering experience, and to turn it into a resource that can help them to valorize the most hidden aspects of their existence. Younger persons, in the end, feel stronger: they are more aware of their capabilities and are better able to face their everyday problems. All this means to us: mission accomplished.

Clinical cases

Evidence of the above can be found in the patients’ accounts of their experiences, which we have collected and analysed. These concern the patients’ rehabilitation, their lifestyle, and the existential choices they have made.25

Here are a few sample cases. Maria Sara was burned at the age of 8 months and is now a biology graduate, teaching in a secondary school in the north of Italy. Maria Concetta was burned at the age of 15 years and now has a degree in medicine with a specialization in plastic surgery - a few months ago she was on a TV quiz programme; she does regular medical duties and lives with a female friend. Giovanni was burned at the age of 8 years and is now about to graduate in political sciences; he is a member of various university clubs. Mimma, who suffered face burns, works as a shop assistant and is an expert make-up artist - she loves going dancing. Maurizio, seriously burned in a road tunnel accident, is now married and has a beautiful little daughter; Giuseppe was involved in the same accident - he suffered face burns - and he has also got married, had a child, and gone back to his old job driving tourist coaches. Giuseppe, now 18 years old, suffered severely disfiguring face, head, and hand burns at the age of 4; he is now attending a computer course. His mother is extraordinarily ever-present; he is a very sociable young man with a fascinating gift for communication, always surrounded by friends - his girl-friend is very good-looking. Baldo and Enza met in the group; now they are married and they both have jobs. Enzo is an electrician; in a moment of despair this father of three young children tried to kill himself. The whole family was taken in charge and today they have found together the warmth of a family that is reborn.

We can remember many other faces and many other stories, but we cannot describe them all. We will never forget them. We realize that not all such stories have the same outcome, but we are sure that all those who enter into our programme are more likely to achieve a positive solution to their existential problems.

Conclusions

The physicians, psychologists, and staff of the Division of Plastic Surgery and Burns Therapy in Palermo have become a concrete point of reference that patients can depend on, a place where they can bring their joys or sorrows, both now and in the future.

The younger patients have by now returned to their schools or jobs; they are busy planning their new lives, they get engaged, they marry, they have children; they go to the seaside without any fear of showing themselves, and they live a normal life; the scars they bear are in the end practically the only mark of their uniqueness.

RESUME. La maladie et la douleur proposent, à des niveaux divers d’intensité, l’alternance dualiste entre deux pôles, celui d’être un corps et celui d’avoir un corps: l’expérience que nous avons de nous-mêmes oscille dans un équilibre qui a besoin continuellement d’être rétabli. Nous avons une image mentale de notre corps qui se transforme continuellement et qui se modifie notamment quand nous sommes malades. Le corps a une fonction communicative et est expérimenté dans son rapport avec les autres, non pas en manière séparée. Depuis l’an 1993, au Département de Chirurgie Plastique et de Thérapie des Brûlures à Palerme, Italie, nous opérons un programme de support psychologique pour les patients brûlés et leurs familles. Ce programme accompagne les patients et leurs familles pendant toute la période de la guérison avec le but de contenir et de prévenir les réactions pathologiques du comportement dues aux brûlures. Après huit années d’expérience nous avons constaté que la vraie santé dépend d’un équilibre entre l’image physique que les patients ont d’eux-mêmes, leur autoimage mentale et leur capacité d’avoir des réactions positives. Le Département a donc mis en action un plan de soins et de procédures qui considère les patients dans leur dimension mentale, physique et psychologique avec l’intention d’obtenir un retour optimal et fonctionnel à la société. La méthode utilisée, celle de la recherche et de l’intervention, a permis d’obtenir des résultats satisfaisants soit pour les patients soit pour les structures hospitalières. L’intervention psychologique s’articule sur trois modalités: pour les individus, pour les familles et pour les groupes. Les mères des enfants brûlés reçoivent un support particulier parce que c’est surtout la mère qui aide l’enfant à s’adapter en premier lieu à la structure hospitalière et ensuite aux séquelles cicatricielles.

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